Chronic Fatigue, dealing with
February 14, 2022 6:41 AM Subscribe
For those who have or helped people with chronic fatigue, how do y'all or the person suffering cope?
A family member has CFS and so we're looking to help of course. Some days she's so weak that getting out of bed isn't an option. Since there doesn't seem to be a cure and definitive way to help relieve the fatigue, have folks found another in particular that helps the patient?
A family member has CFS and so we're looking to help of course. Some days she's so weak that getting out of bed isn't an option. Since there doesn't seem to be a cure and definitive way to help relieve the fatigue, have folks found another in particular that helps the patient?
I don't have CFS, but had fatigue from long covid for a year or more. She might already know all of this, but I found the online book Recovery from Chronic Fatigue Syndrome helpful in terms of understanding the basic concepts of living with chronic fatigue - pacing, staying within your 'energy envelope' etc. She can ignore the element of 'recovery' if that's not helpful (for some people it can reek of false hope that's never fulfilled). Even ignoring the fact that the guy did recover over time, there's a lot of useful advice in there for living with it day to day. It does eventually start to repeat points already made so you probably don't need to read the whole thing.
I also downloaded the audiobook of How to Be Sick (more info here) after reading it recommended on AskMe. I didn't end up listening to the whole thing (I think I just got distracted...), but what I did listen to was helpful in terms of acceptance, maintaining equanimity in the face of the general shitness of the situation, etc. Author Toni Bernhard writes from her own experience and IIRC I'm pretty sure it was CFS she has/had herself.
You probably already know this, but don't go anywhere near anyone offering GET (Graded Exercise Therapy), which encourages people with CFS to take gradually-increasing amounts of exercise regardless of how ill it makes them - it has made people much sicker and was recently removed from the official guidance on CFS treatment in the UK after a huge amount of campaigning.
Best of luck to your family member and those supporting them, it's such a crappy, poorly-understood thing to be dealing with.
posted by penguin pie at 7:46 AM on February 14, 2022 [10 favorites]
I also downloaded the audiobook of How to Be Sick (more info here) after reading it recommended on AskMe. I didn't end up listening to the whole thing (I think I just got distracted...), but what I did listen to was helpful in terms of acceptance, maintaining equanimity in the face of the general shitness of the situation, etc. Author Toni Bernhard writes from her own experience and IIRC I'm pretty sure it was CFS she has/had herself.
You probably already know this, but don't go anywhere near anyone offering GET (Graded Exercise Therapy), which encourages people with CFS to take gradually-increasing amounts of exercise regardless of how ill it makes them - it has made people much sicker and was recently removed from the official guidance on CFS treatment in the UK after a huge amount of campaigning.
Best of luck to your family member and those supporting them, it's such a crappy, poorly-understood thing to be dealing with.
posted by penguin pie at 7:46 AM on February 14, 2022 [10 favorites]
Oh. One more thing. Because I'm tired all the time I had started sleeping later and later in the day and then staying in bed for quite a while after waking up. But. Since sleeping doesn't actually relieve my fatigue, I now try to go to bed at 11:30 and get up at 8am every day. I take a shower if I'm up to it and then lay on the couch and listen to music. It makes life feel more normal and makes me feel like like an invalid. (Even if kinda am...)
posted by jeszac at 7:49 AM on February 14, 2022 [3 favorites]
posted by jeszac at 7:49 AM on February 14, 2022 [3 favorites]
Bit of a different approach here (agree with what's been said above though!) - my partner has been trying to manage symptoms for the best part of a decade. Has tried nearly all the things out there, including change of diet. Impact: minimal. Worst of all: Mickel therapy. Here's where we are at with our understanding:
Humans have evolved from animals - meaning that when there is a threat the fight or flight response takes over. But it's more complex for us. We can do fight, flight, freeze or fawn (basically trying to ingratiate yourself with the threat). Imagine a gazelle being attacked by a lion. If it escapes, it may do so by freezing (playing dead), and once the threat is clear, the animal will get up and shake all over. In doing so it releases the freeze and reasserts it life.
Of course, for us, threats aren't just lion-shaped. Stress is one particularly insidious threat that isn't even visible. However, it can leave us frozen inside, as 1) stress can be ongoing for a very long time 2) we're not used to being all like "woo yeah that stress is O.V.E.R". Chronic fatigue seems to be a sort of permanent freeze.
So dealing with fatigue, my partner has started from Waking the Tiger, learning to un-freeze. It's been a big old journey as predictably, the stresses are deep and complex (in fact, it relates to complex PTSD). We've been learning about compassion and how to have self compassion, learning about toxic shame, what a parentified child is, delving deep basically. Uncovering all the past traumas. Something like trauma releasing exercises (disclaimer - we do this but I have not tried this one) would be a great way to start connecting with the hidden tension that is the cause, at least in our experience.
Feel free to memail me if you want to discuss more. We are doing this in an ongoing way, and it's been helping me with my CPTSD as well, though I don't have CFS myself.
posted by london explorer girl at 8:37 AM on February 14, 2022 [5 favorites]
Humans have evolved from animals - meaning that when there is a threat the fight or flight response takes over. But it's more complex for us. We can do fight, flight, freeze or fawn (basically trying to ingratiate yourself with the threat). Imagine a gazelle being attacked by a lion. If it escapes, it may do so by freezing (playing dead), and once the threat is clear, the animal will get up and shake all over. In doing so it releases the freeze and reasserts it life.
Of course, for us, threats aren't just lion-shaped. Stress is one particularly insidious threat that isn't even visible. However, it can leave us frozen inside, as 1) stress can be ongoing for a very long time 2) we're not used to being all like "woo yeah that stress is O.V.E.R". Chronic fatigue seems to be a sort of permanent freeze.
So dealing with fatigue, my partner has started from Waking the Tiger, learning to un-freeze. It's been a big old journey as predictably, the stresses are deep and complex (in fact, it relates to complex PTSD). We've been learning about compassion and how to have self compassion, learning about toxic shame, what a parentified child is, delving deep basically. Uncovering all the past traumas. Something like trauma releasing exercises (disclaimer - we do this but I have not tried this one) would be a great way to start connecting with the hidden tension that is the cause, at least in our experience.
Feel free to memail me if you want to discuss more. We are doing this in an ongoing way, and it's been helping me with my CPTSD as well, though I don't have CFS myself.
posted by london explorer girl at 8:37 AM on February 14, 2022 [5 favorites]
I have pretty severe CFS among other things. Thing one is understanding the mechanics. The body cannot tolerate stress. And that tolerance level changes. Sometimes based on what you do, and how you live, and sometimes it’s arbitrary. It fluctuates constantly. This is a good research study that was conducted to diagnose CFS/ME and explains that the cells don’t process stress. Which is why exertion creates flares.
Since it’s mostly symptom management and lifestyle changes, tackle even the small things because it adds up. Literally ANY improvement is an improvement. There are meds for the symptoms - nausea
, headache, whatever. Some people tolerate stimulants, others don’t. Things like compression socks can help with POTS. Be sure it figure out, if you can, what is the CFS (less treatable) and what is other conditions (possibly treatable). Many disabled people I know have more than one illness and some of THOSE can be managed to improve overall.
Join an online community that discusses things. Twitter is a HUGE source for disabled people to share and learn and help each other. Same with other social media.
I recommend this strongly because a lot of illness management is lifestyle changes. And doctors generally don’t have these illnesses and don’t understand how patients live. Actual sick people can really help with what may have helped them. Some people like drinking a full glass of water right when they wake up. Some people have tips for how they pace themselves.
Accessibility equipment is also something that disability spaces can help with. A shower stool, a wheelchair, a walker, etc. These can all help reduce exertion. And again, many times doctors don't think of these.
Another thing is therapy. This is a shitty situation. And it’s hard to accept. But accepting is helpful towards making the fullest of what one CAN do. But it’s important to find someone familiar with chronic illness and disability politics who won’t try to push physically but support emotionally.
For myself, I have found that trying to do small amounts of something physical most days is helpful. Sitting all the time deconditions me and it’s really hard to get the momentum back. A routine is helpful as a guide but it always is up to my body. However I inevitably have flares. They are worse if I push too much or don’t treat my body well. (That line is personal and changes constantly.)
Overall, my advice is to start researching and reaching out and getting into disability spaces online. (Again, Twitter, TikTok, Facebook, etc.) Because the medical system isn’t really designed to help sick people. But other people have been so helpful with sharing their lives and experiences.
Edit: pardon typos.
posted by Crystalinne at 11:01 AM on February 14, 2022 [6 favorites]
Since it’s mostly symptom management and lifestyle changes, tackle even the small things because it adds up. Literally ANY improvement is an improvement. There are meds for the symptoms - nausea
, headache, whatever. Some people tolerate stimulants, others don’t. Things like compression socks can help with POTS. Be sure it figure out, if you can, what is the CFS (less treatable) and what is other conditions (possibly treatable). Many disabled people I know have more than one illness and some of THOSE can be managed to improve overall.
Join an online community that discusses things. Twitter is a HUGE source for disabled people to share and learn and help each other. Same with other social media.
I recommend this strongly because a lot of illness management is lifestyle changes. And doctors generally don’t have these illnesses and don’t understand how patients live. Actual sick people can really help with what may have helped them. Some people like drinking a full glass of water right when they wake up. Some people have tips for how they pace themselves.
Accessibility equipment is also something that disability spaces can help with. A shower stool, a wheelchair, a walker, etc. These can all help reduce exertion. And again, many times doctors don't think of these.
Another thing is therapy. This is a shitty situation. And it’s hard to accept. But accepting is helpful towards making the fullest of what one CAN do. But it’s important to find someone familiar with chronic illness and disability politics who won’t try to push physically but support emotionally.
For myself, I have found that trying to do small amounts of something physical most days is helpful. Sitting all the time deconditions me and it’s really hard to get the momentum back. A routine is helpful as a guide but it always is up to my body. However I inevitably have flares. They are worse if I push too much or don’t treat my body well. (That line is personal and changes constantly.)
Overall, my advice is to start researching and reaching out and getting into disability spaces online. (Again, Twitter, TikTok, Facebook, etc.) Because the medical system isn’t really designed to help sick people. But other people have been so helpful with sharing their lives and experiences.
Edit: pardon typos.
posted by Crystalinne at 11:01 AM on February 14, 2022 [6 favorites]
One thing you can to do help the patient is to believe them and not push them to do more than they think they can. So much of chronic illnesses or chronic fatigue is this feeling that you must be going crazy. It is a relief to have someone say they believe you, that they don’t resent you for what you can’t do, that they will pick up the slack.
Therapy for all parties. It’s good to have a place to vent or release feelings of guilt because these are normal human reactions to having a partner who is sick. But also it’s not fair to put that on them. So find a therapist who is familiar with these types of illnesses, that will believe the situation as you explain it, and will help you learn tools to cope.
posted by you'rerightyou'rerightiknowyou'reright at 11:31 AM on February 14, 2022 [6 favorites]
Therapy for all parties. It’s good to have a place to vent or release feelings of guilt because these are normal human reactions to having a partner who is sick. But also it’s not fair to put that on them. So find a therapist who is familiar with these types of illnesses, that will believe the situation as you explain it, and will help you learn tools to cope.
posted by you'rerightyou'rerightiknowyou'reright at 11:31 AM on February 14, 2022 [6 favorites]
Pacing and staying within your energy envelope is key. The key symptom for ME/CFS is PEM: Post Exertional Malaise, essentially falling into a significantly worse state for days or weeks after too much exertion. How much exertion is too much varies greatly from person to person and can be mental or physical. Even things that might seem like no exertion at all (listening to music for instance) can be too much for some people.
Easier said than done, but the most important thing is to figure out how much you can do mentally or physically without suffering PEM and then staying within that limit. You need to adjust as you go of course, as your sensitivity varies. Learning the early signs of overdoing it is also important and these might be different for different types of over-exertion.
It's worth also considering frequent issues that people with ME/CFS have that perhaps can be managed to some degree: POTS, mold sensitivities, IBS or other gastro issues, structural issues in the neck and many more.
Don't shy away from mobility aids: electric scooters, electric wheelchairs, walkers, stools for bathing, etc. Even learning to walk very slowly is an important skill. Many people with ME/CFS find it easier to exert themselves mentally when they are lying down versus sitting up or standing.
Some people find fitness tracking watches are useful to keep their heart rate under a certain level or to use heart rate variability as an indicator.
As with any chronic illness, especially one where some people do sometimes spontaneously get better, there are a bunch of people who think they've found the cure, be it psychological, chemical, behavioural or spiritual. Many of them probably really did get better after doing thing X, but there probably wasn't any causal relationship. There are a lot of alternative tests and treatments that don't have good track records. It's tempting to try to grasp at those threads, but I think it's better not to chase these unless you are sure you have the money and energy to do so safely. Otherwise, it probably makes more sense to donate towards research, which is unfortunately still funded to a significant degree by patients and their families, especially in the US. Hopefully, that's changing with long Covid.
Even though it is terrible how many people are ending up with ME/CFS or something very similar after Covid, I do think that the situation for ME/CFS patients is as hopeful as it has ever been because of the growing research focus on long Covid. It's clear that we'll need to continue fighting those who will try to blame long Covid on psychological causes, just as we've been fighting the same battle with ME/CFS for decades, but I think things are generally heading in the right direction.
posted by ssg at 7:38 PM on February 14, 2022 [5 favorites]
Easier said than done, but the most important thing is to figure out how much you can do mentally or physically without suffering PEM and then staying within that limit. You need to adjust as you go of course, as your sensitivity varies. Learning the early signs of overdoing it is also important and these might be different for different types of over-exertion.
It's worth also considering frequent issues that people with ME/CFS have that perhaps can be managed to some degree: POTS, mold sensitivities, IBS or other gastro issues, structural issues in the neck and many more.
Don't shy away from mobility aids: electric scooters, electric wheelchairs, walkers, stools for bathing, etc. Even learning to walk very slowly is an important skill. Many people with ME/CFS find it easier to exert themselves mentally when they are lying down versus sitting up or standing.
Some people find fitness tracking watches are useful to keep their heart rate under a certain level or to use heart rate variability as an indicator.
As with any chronic illness, especially one where some people do sometimes spontaneously get better, there are a bunch of people who think they've found the cure, be it psychological, chemical, behavioural or spiritual. Many of them probably really did get better after doing thing X, but there probably wasn't any causal relationship. There are a lot of alternative tests and treatments that don't have good track records. It's tempting to try to grasp at those threads, but I think it's better not to chase these unless you are sure you have the money and energy to do so safely. Otherwise, it probably makes more sense to donate towards research, which is unfortunately still funded to a significant degree by patients and their families, especially in the US. Hopefully, that's changing with long Covid.
Even though it is terrible how many people are ending up with ME/CFS or something very similar after Covid, I do think that the situation for ME/CFS patients is as hopeful as it has ever been because of the growing research focus on long Covid. It's clear that we'll need to continue fighting those who will try to blame long Covid on psychological causes, just as we've been fighting the same battle with ME/CFS for decades, but I think things are generally heading in the right direction.
posted by ssg at 7:38 PM on February 14, 2022 [5 favorites]
Honestly, if it's at all possible, get the person to a ME specialist if they don't have one already. ME is one of those illnesses where the difference in potential benefit from a GP and a specialist is absolutely stark. There are few such people, and if you're not in a handful of cities you will have to travel, or see someone virtually, but an ME specialist will be equipped to deploy tools to investigate their case properly and help the person find the little bits on the margin that *can* be improved. I'm alive right now because of a doctor like that. MeMail if you need help finding someone.
posted by jocelmeow at 6:38 AM on February 15, 2022
posted by jocelmeow at 6:38 AM on February 15, 2022
If your family member is on fb, have them join this Severe ME group, where people will have the perspective to be helpful.
I've been bedridden because of ME since 2007. Things that have helped me, some of which are direct, some for some of the comorbidities ssg mentions:
low dose nocturnal oxygen (boosts energy, improves resilience, staves off PEM some - you will need a doctor willing to prescribe a concentrator despite technically normal O2 levels, and that's an ME specialist)
sleep meds (the best rest possible is absolutely vital)
inosine (antiviral and immune modulator)
betaine hydrochloride and digestive enzymes (to replace the digestive stuff my body doesn't have the energy to make)
low dose naltrexone (for pain - at higher doses it's immune modulating, my current specialist tells me)
beta blockers (to control heart rate and limit the impact of adrenaline)
ketotifen and quercetrin (for mast cell issues I also have)
P5P (sleep)
Sam-e (sleep)
Methylcobalamin (taken sublingually - my late ME specialist wanted us on this and not hydroxo and not cyano)
Magnesium (topical and sublingual - sleep)
Calcium (sleep, heart rate)
D3 (pain)
taurine (general wellness - my late ME specialist had a complicated answer about why this is so necessary)
L-glutamine (to help with gut issues)
I'm experimenting with pyridostigmine right now to see if it helps me with POTS.
There are lots of other supplements and meds to try - I'm only listing what I've stayed with myself, and it varies a lot from person to person in ME. I know it's a miserable and expensive and overwhelming prospect to undertake that and may not be possible. Finding what works in terms of meds and supps for someone who's severe is the work of years, and it's best to keep expectations as low as you can. While none of the possibilities will provide true relief, when you're bedridden, every little bit of gain really counts.
posted by jocelmeow at 7:02 AM on February 15, 2022 [5 favorites]
I've been bedridden because of ME since 2007. Things that have helped me, some of which are direct, some for some of the comorbidities ssg mentions:
low dose nocturnal oxygen (boosts energy, improves resilience, staves off PEM some - you will need a doctor willing to prescribe a concentrator despite technically normal O2 levels, and that's an ME specialist)
sleep meds (the best rest possible is absolutely vital)
inosine (antiviral and immune modulator)
betaine hydrochloride and digestive enzymes (to replace the digestive stuff my body doesn't have the energy to make)
low dose naltrexone (for pain - at higher doses it's immune modulating, my current specialist tells me)
beta blockers (to control heart rate and limit the impact of adrenaline)
ketotifen and quercetrin (for mast cell issues I also have)
P5P (sleep)
Sam-e (sleep)
Methylcobalamin (taken sublingually - my late ME specialist wanted us on this and not hydroxo and not cyano)
Magnesium (topical and sublingual - sleep)
Calcium (sleep, heart rate)
D3 (pain)
taurine (general wellness - my late ME specialist had a complicated answer about why this is so necessary)
L-glutamine (to help with gut issues)
I'm experimenting with pyridostigmine right now to see if it helps me with POTS.
There are lots of other supplements and meds to try - I'm only listing what I've stayed with myself, and it varies a lot from person to person in ME. I know it's a miserable and expensive and overwhelming prospect to undertake that and may not be possible. Finding what works in terms of meds and supps for someone who's severe is the work of years, and it's best to keep expectations as low as you can. While none of the possibilities will provide true relief, when you're bedridden, every little bit of gain really counts.
posted by jocelmeow at 7:02 AM on February 15, 2022 [5 favorites]
Here's a new how-to guide on pacing from ME Action that may be useful.
posted by ssg at 7:51 PM on February 15, 2022
posted by ssg at 7:51 PM on February 15, 2022
The most important thing for me was figuring out how to stay inside my energy allowance and not overspend, as it were. So figuring out what things make you happy and you enjoy that don't wear you out. Maybe even things you like for a few energy levels. Like, can sit up and think: good book, can think but eyes closed: audiobook, too tired to think but not napping: favorite music. But for your interests.
Amount of energy is generally for a several day stretch. So if someone asks to get together on Saturday and that will take all your energy, remember that you're busy later that day and probably Sunday too, whether the calendar is actually blocked off or not. Because you don't have energy for another get-together, so your weekend is full at this point.
posted by blueberry monster at 9:12 AM on February 16, 2022 [3 favorites]
Amount of energy is generally for a several day stretch. So if someone asks to get together on Saturday and that will take all your energy, remember that you're busy later that day and probably Sunday too, whether the calendar is actually blocked off or not. Because you don't have energy for another get-together, so your weekend is full at this point.
posted by blueberry monster at 9:12 AM on February 16, 2022 [3 favorites]
The Bateman-Horne Center also has a new guide that may be helpful.
posted by ssg at 1:17 PM on February 16, 2022
posted by ssg at 1:17 PM on February 16, 2022
One of the things I miss most as someone who struggles with chronic illness and the often extreme fatigue is lack of social stimulation. Very rapidly people stop reaching out, especially in the flesh, which is what I, personally need most. But people are different.
If your relative is like me, what I'd appreciate is short but regular visits. Gifts of books or music are wonderful, and give you something to talk about. I really struggle with feeling boring because I go through periods where I don't leave the house except for groceries. If your relative is into tv/movies, personally I find tv easier to follow because each episode is shorter.
It sounds like your relative has enough practical help, if they're bedbound. But for anyone else reading this who also has this question about friends and relatives that aren't bedbound or partneree, here are other things I wish I had the social capital for: help moving, which happens a lot when you're sick and poor. When you do that yourself it takes weeks or months to physically recover. Before each of my most recent surgeries there was about a year where the pain was bad enough for the year preceding that cooking almost wasn't possible, and cleanup was a nightmare. Unrelenting pain causes exhaustion so deep it's impossible to describe. Gifts of food, washing dishes, food delivery--all those are good. Help dealing with medical stuff, just making phone calls is useful sometimes. Small comforts are greatly appreciated. For anyone who is bedbound anything that helps cushion, change position, or protect against bedsores is good.
But mainly just understanding and being sought out on a regular basis as a reminder that the sick person is still valued, and part of society even when they can't do work to make new connections when the old ones inevitably fail. Because they will. I got sick 25 years ago, and I can assure you that almost everyone falls away eventually, until you feel like you're not bound to the earth by anything anymore. It's devastating.
If this is an older relative, they might like to send Christmas cards, but not have the energy. Try offering to address envelopes next year if they'd like to send some out. What about small tasks, like hanging pretty pictures, or updating their computer software? It's nice to have different things to look at when you're stuck in one place. Personally, I love animals, so I would be thrilled with a visit that includes something small and furry or feathered.
So in summary: soft cushy things for bed (texture is also nice), visits, entertainment (books, music, videos), things to look at: pictures, plants, company and conversation, helper type stuff: making calls, food/food delivery, laundry, hanging pictures, computer maintenance.
And above all, a willingness to reschedule while making it seem ok and normal while making someone feel like a normal, valued friend or family member. Remembering the details of someone's illness can make them see seen and valued also. I hate that I've had to repeatedly explain things to my family and they still ask me basic questions I've answered to them over and over again. It's not important to them so they don't retain the information. "Can't you just do x? Haven't you tried y?" I've answered the same questions with the same people over and over again.
If your family member is even modestly well-off, my answers would vary a bit. I can't help seeing this through my narrative, in which poverty and illness are entwined like lovers. But I think anyone wants to feel valued and connected, and sometimes helping people with tasks they can afford to hire someone to do can still sometimes achieve that goal. I think. It's been so long I can't really remember if that's how it goes or not.
posted by liminal_shadows at 4:45 PM on February 16, 2022 [3 favorites]
If your relative is like me, what I'd appreciate is short but regular visits. Gifts of books or music are wonderful, and give you something to talk about. I really struggle with feeling boring because I go through periods where I don't leave the house except for groceries. If your relative is into tv/movies, personally I find tv easier to follow because each episode is shorter.
It sounds like your relative has enough practical help, if they're bedbound. But for anyone else reading this who also has this question about friends and relatives that aren't bedbound or partneree, here are other things I wish I had the social capital for: help moving, which happens a lot when you're sick and poor. When you do that yourself it takes weeks or months to physically recover. Before each of my most recent surgeries there was about a year where the pain was bad enough for the year preceding that cooking almost wasn't possible, and cleanup was a nightmare. Unrelenting pain causes exhaustion so deep it's impossible to describe. Gifts of food, washing dishes, food delivery--all those are good. Help dealing with medical stuff, just making phone calls is useful sometimes. Small comforts are greatly appreciated. For anyone who is bedbound anything that helps cushion, change position, or protect against bedsores is good.
But mainly just understanding and being sought out on a regular basis as a reminder that the sick person is still valued, and part of society even when they can't do work to make new connections when the old ones inevitably fail. Because they will. I got sick 25 years ago, and I can assure you that almost everyone falls away eventually, until you feel like you're not bound to the earth by anything anymore. It's devastating.
If this is an older relative, they might like to send Christmas cards, but not have the energy. Try offering to address envelopes next year if they'd like to send some out. What about small tasks, like hanging pretty pictures, or updating their computer software? It's nice to have different things to look at when you're stuck in one place. Personally, I love animals, so I would be thrilled with a visit that includes something small and furry or feathered.
So in summary: soft cushy things for bed (texture is also nice), visits, entertainment (books, music, videos), things to look at: pictures, plants, company and conversation, helper type stuff: making calls, food/food delivery, laundry, hanging pictures, computer maintenance.
And above all, a willingness to reschedule while making it seem ok and normal while making someone feel like a normal, valued friend or family member. Remembering the details of someone's illness can make them see seen and valued also. I hate that I've had to repeatedly explain things to my family and they still ask me basic questions I've answered to them over and over again. It's not important to them so they don't retain the information. "Can't you just do x? Haven't you tried y?" I've answered the same questions with the same people over and over again.
If your family member is even modestly well-off, my answers would vary a bit. I can't help seeing this through my narrative, in which poverty and illness are entwined like lovers. But I think anyone wants to feel valued and connected, and sometimes helping people with tasks they can afford to hire someone to do can still sometimes achieve that goal. I think. It's been so long I can't really remember if that's how it goes or not.
posted by liminal_shadows at 4:45 PM on February 16, 2022 [3 favorites]
One other thing that could be nice is a good extended chair. If they don't already have somewhere to sit where their legs are supported and they can lean back when they're tired. Like a lazyboy (however that's spelled) or a chaise longue. It helps somewhat tired days not become bedridden days. And let's you do whatever work or reading you have from a comfortable place.
posted by blueberry monster at 11:00 AM on February 20, 2022 [1 favorite]
posted by blueberry monster at 11:00 AM on February 20, 2022 [1 favorite]
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posted by jeszac at 7:44 AM on February 14, 2022 [2 favorites]